11/20/2013 01:46 pm ET Updated Dec 06, 2017

How Facebook Gives Me a Voice After ALS Took It Away

Hiro Fujita

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In February 2010, I started to have difficulty lifting my arms. Over the next few months, my legs began to feel very weak and I struggled going up stairs. Finally I decided to go to the hospital. I figured they would run tests for a week, give me some meds and that would be the end of it.

But the tests continued into a second week. They took samples of my spinal cord fluid and ran electromyograms, twice. It's pretty much torture. They stick a thick needle all over the body one place at a time and ask you to flex your muscle. My shins, thighs, hands, arms, shoulders, neck, back...It was around that time I started to worry something was really wrong.

But when the doctors said that I should have my parents present for the diagnosis, I thought they were just overreacting so I just had my brother there.

On November 26, 2010, I was told that I have ALS -- amyotrophic lateral sclerosis.

ALS is a terminal disease that attacks your motor neurons, paralyzing every part of your body, eventually fatally affecting the lungs. Until then, you slowly lose mobility. The doctors went into detail, but I hardly heard a word they said.

All I heard was, "Your body will slowly become paralyzed and you will die. There is no cure."

I can't explain what that felt like. But my whole body understood that EVERYTHING about my life was about to change. My brother and I looked at each other and I silently said, "You're kidding right..."

Afterwards, my brother and I walked around the hospital. We cried, laughed, got angry and went crazy...We went to a shrine close by and prayed. I said everything from, "Please help me" to "I'm gonna kill YOU." I felt like I was going insane.

That night, I watched every video about ALS I could find online. It was hard but I knew I couldn't run away. I wanted to learn everything I could about my new friend. I would be strangely calm and then suddenly my heartbeat would jump to 500bps. I was up all night on this roller coaster of emotions.

Over the next few months and years, the disease began to take over. It moves so slowly that you don't realize it until you remember the difference compared to last week. It becomes hard to brush your teeth and shave. Then you start tripping over nothing and breaking your two front teeth. Then you sit on your sofa, not knowing that you won't be able to get up. "Being stuck" is one of the toughest challenges of this disease. It was so scary to feel my body paralyzed and completely irresponsive to my demands. Your heart starts pounding and you start sweating profusely. You know you won't be, but your mind somehow tricks you to believe that you'll be stuck there forever.

I needed to do something. I wanted to start a campaign to raise awareness about ALS and find a cure. I had friends come over everyday and talk it out. The first thing was what the name of the movement should be... we went through a lot of ideas.

One day I was making NIKEiDs -- personalized Nike shoes -- and I distinctly remember typing in "FUK ALS." Nike didn't accept. I tried, "KIL ALS." Nike didn't accept. I thought,"What do I want most?"... so I typed "END ALS." It went through... I told my friends and coworkers, and END ALS started in January 2012.

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Our first mission is to find a cure. The second mission is to change policy to provide comfort in communication for people living with ALS. Technology makes all of the difference in allowing ALS patients to live as normally and comfortably as possible. For example, I use Tobii eye tracking software so I can control my computer cursor with my eyes. Japan's insurance doesn't cover it unless you can only move your eyes, but every person in need deserves it. This second mission is a means to an end for the first mission. It is to give voice back to where silenced, so patients can unite to raise awareness and demand a cure.

Tobii allows me to continue to work as a planning director at McCann Erickson, an ad agency. It enables me to work on END ALS. It also lets me access Facebook, which is my main way to connect and hang with friends. It is a way for me to live my pre-ALS life through others. It can be painful to see what you're missing out on, but it's comforting it still exists. Not to mention all of the long and short "stay strong" messages.

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Facebook has also put me in touch with END ALS comrades all over the world: Brazil, U.S., Canada, U.K., Norway, Germany, Taiwan, Hong Kong, Singapore and all of Japan. The wealth of information shared is invaluable. It's a powerful weapon for the global ALS community to END ALS.

In January, I had to get a tracheotomy so I now breathe through a tube. This means I can no longer speak, but it does not mean I am giving up. My friends give me strength and I will keep fighting. For myself. For others. For a cure. My voice is louder now that ALS took it away.

Hiro has completed a book "99% THANK YOU - Things even ALS can't take away," available in bookstores in Japan today. He wrote the whole book in Japanese and English with his Tobii eye tracking system. The book is available at and soon at Kinokuniya online bookstore. The book will also be available as an electronic book so that patients like Hiro can read it.

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